The Perception of Leprosy Stigma: Societal Factors, Resistance and Resilience in People Affected by Leprosy in Northern Mozambique

麻风病是一种被忽视的热带疾病（NTD），也被称为汉森病（HD）。这是一种由麻风分枝杆菌引起的轻度传染病。自1982年采用多药治疗以来，麻风病的管理取得了重大进展，为数百万人提供了治愈方法。2000年在全球消除了作为公共卫生问题的麻风病。然而，根据世卫组织官方数据，2018年全球新登记麻风病例为208619例（世卫组织，2019年）。根据2018年底登记的184 212例治疗病例（世卫组织，2019年），患病率相当于0.2/ 10,000，但在流行区，这一比率可能要高得多。例如，印度和印度尼西亚等负担较高的国家的患病率为0.6，巴西的患病率为1.4（世卫组织，2019年）。国家麻风病控制服务的主要重点是疾病监测和医疗。然而，许多研究（Rafferty, 2005; Litt, 2012）表明，该疾病对健康的影响可能比身体和功能方面更重要。有时心理健康会受到抑郁甚至自杀的影响（Cross 2006）。福祉困扰是与麻风有关的耻辱和歧视，影响着社会和文化规范、行为和态度。本研究将探讨病耻感的系统因素和结构过程。重点将放在麻风病患者和因该病致残的人身上。此外，我将调查受影响的人抵抗污名的能力，将实际抵抗定义为“抵抗他人贬损和歧视的意愿”（Thoits, 2011）。我将探讨麻风病患者在个人、同伴和社区层面克服耻辱感的日常做法、策略和能力。此外，我将研究耻辱抵抗如何影响个人和家庭的恢复力，作为个人和家庭承受逆境（Walsh, 2003）或管理压力或创伤的重要来源（Windle, 2011）的过程，如耻辱。上述探索是出于以下考虑。一方面，关于麻风相关污名和歧视的研究主要集中在被污名的人、污名背景和更广泛的系统。另一方面，关于麻风病耻感抵抗的研究很少，这些研究可以评估麻风病耻感患者对抗麻风病耻感的能力。虽然代理和抵抗是其他受压迫群体研究的突出主题，但污名文学倾向于通过“悲惨生活”范式来描绘残疾人（Oliver, 1990; Scambler, 2009）。从有生活经验的人的角度对污名抵抗进行的定性调查指出，污名抵抗是一个利用个人技能和经验在个人、同伴和公共层面对抗污名的积极过程（Frederick, 2017）。因此，对耻辱的抵抗也可能与恢复力和自尊的增加有关。

Leprosy is a neglected tropical disease (NTD) also known as Hansen's disease (HD). It is a mildly infectious disease caused by a bacillus called Mycobacterium leprae. Since the introduction of multidrug therapy (MDT) in 1982, the management of leprosy has advanced significantly, offering a cure to millions of people. Elimination of leprosy as public health problem was achieved globally in 2000 . However, in 2018, according to WHO official figures, 208 619 (WHO, 2019) new leprosy cases have been registered globally. Based on 184 212 cases registered for treatment at the end of 2018 (WHO, 2019), prevalence rate corresponds to 0.2/10 000, nevertheless this rate can be much higher in endemic districts. For example higher burden countries such as India and Indonesia have a prevalence rate of 0.6, in Brazil is 1.4 (WHO, 2019). The primary focus of national leprosy control services is disease surveillance and medical treatment. However, numerous studies (Rafferty, 2005; Litt, 2012) suggest that the wellbeing consequences of the disease can be more significant than the physical and functional dimensions. Sometimes the mental wellbeing is affected with depression and even suicide (Cross 2006). A wellbeing distress is leprosy-related stigma and discrimination, influencing societal and cultural norms, behaviours and attitudes. This research will explore systemic factors and structural processes underlying stigma. The focus will be on people affected by leprosy and those who acquired a disability due to the disease . Furthermore, I will investigate on the ability of people affected to resist stigma, defining actual resistance as "the willingness to resist derogation and discrimination by other people"(Thoits, 2011). I will explore stigma resistance of people affected by leprosy considering everyday practices, strategies and abilities to overcome stigma at personal, peer and community levels. Additionally, I will investigate how stigma resistance can impact individual and family resilience, as a process by which individuals and families withstand adversities (Walsh, 2003) or manage significant sources of stress or trauma (Windle, 2011), such as stigma. The explorations mentioned above are motivated by the following considerations. On the one hand, studies on leprosy-related stigma and discrimination largely focused on the stigmatised person, the stigmatising context and the broader systems. On the other hand, there is a paucity of studies on leprosy stigma resistance, which could evaluate the agency of people affected to fight the stigma. While agency and resistance are prominent themes in research on other oppressed groups, the stigma literature has tended to portray disabled people through a "tragic lives" paradigm (Oliver, 1990; Scambler, 2009). A qualitative investigation of stigma resistance from the perspective of people with lived experience pointed to stigma resistance being an active process of using one's skills and experiences to fight stigma at the personal, peer, and public levels (Frederick, 2017). Hence, stigma resistance could also be interconnected to resilience and increase of self-esteem.